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27 December 2009

If you are unfortunate enough to be caught in the NICU during the Christmas season, various groups, persons and staff will try to make the holiday a little bit brighter for you given your set of circumstances.

Two years ago when we found ourselves stuck in a never ending cycle of ringing alarms, blood draws and vent changes, I would invariably arrive at Liam's isolette to find unexpected, random packages festooned in holiday adornments. Sometimes the gifts would be cheap and cheesey (little resin angels, stuffed animals) and at other times the gifts would be very useful and practical (gift cards to the cafeteria). On one of those days, one of the gifts I received turned out to be one of my most favorite gifts. Ever.

I had arrived at the bedside to find a simple, plain glass ornament that had been turned into a beautiful reminder of my son's first Christmas out in the big world. On the front were his tiny, barely an inch long feet, stamped in red. On the back were the words "Liam's First Christmas 2007".

This ornament is so special to me that it takes a prominent place now in our Christmas decorating. It even has it's own stand so it doesn't get lost in all of the other special ornaments on our tree and it is prominently displayed on our tv stand.It's a precious reminder of so many things, but most important to me is it's unexpected arrival and the heartfelt sincerity behind it.

This year for Christmas, I received another unexpected and heartfelt gift. While pregnant with my boys I had joined a message board just for twin moms to be. A few of those moms have continued to follow in Liam's journey and wanted to help. Imagine my surprise when I opened up my email on Christmas Eve. They sent Liam $215 for Christmas in order to help pay for his next round of therapy (we now have $700 of the $3000 needed). To say I was blown away is an understatement. I am very grateful to my fellow twin moms and appreciate so much their willingness to give to Liam. I would thank you all personally but since I don't know who everyone was, I will just have to resort to a generic thank you here.

24 December 2009

22 December 2009

We have this neat little seat that we bought online from a grandma who makes neat little things for babies to play, sit or sleep in. The seat we bought is actually specifically made for special needs kids.

I bought it a long time ago with the hope that Liam would be able to use it. He wasn't ready for it when I got it, but he is finally able to use it now. He can sit in the front seat of the shopping cart and look all around while I shop (he's fond of the lights). He'll still drop his head once in a while, but with the back rest he is able to rest his head and sit up for long periods of time. Just look at how much he enjoyed our shopping trip today! =)

19 December 2009

Liam's comprehension of what I say to him is really starting to pick up. I have numerous things that I can say to him and he knows what I'm talking about (games, songs, stories, etc...). But it seems that he is picking things up quickly now and with just one word. It's like he is enjoying listening to us talk and is understanding things better.

For example, he learned yesterday what I mean when I say the word 'raspberry' (or 'razzberry') and he loves for me to give them.

He also likes it when my hands are cold and I ask him if I can warm them on his belly. =) He thinks that is pretty funny.

And he started making consonant sounds this week! He has always made open vowel sounds but he has added in a few consonants this week. It was funny to hear him say blah. So, I am hoping some babbling is right around the corner.

Now, if I could just find a speech path around here to help me out with it all.

09 December 2009

Liam is doing very well. He has made some wonderful changes since doing HBOT. As one always wonders, was it the HBOT or would he have done these changes anyway? And I can say that I don't think Liam would have made these changes so quickly without the oxygen. Things for Liam normally progress at a snails pace. But look what all he's done just the last few weeks:

He is consistently picking up his head and holding it up while I carry him on my hip. And when I say consistently, I mean he keeps it up all the time now. He used to cuddle in on my neck because he didn't have the strength (or desire?) to pick it up. But now he wants it up and although he is still not a pro at it, he is doing it! Did I mention he does it consistently? He doesn't hold his head down anymore when I carry him. I love it!

Liam rolled from back to belly all by himself on a hard floor. And dang it all if I didn't even see it! That's how he prefers things I suppose. I didn't see him roll from back to belly on my bed either. I came back into the room to find him on his belly! This time, he was on a rug on a hard wood floor and I left him under the watchful eyes of my father-in-law and brother-in-law and they casually mentioned it to me later on after it had happened. They didn't think any thing of it because they thought it was a normal occurrence! Man, I wished I would have seen it! I hope he does it again soon. We work so hard on rolling around here.

Liam is consistently bringing toys to his mouth while laying on his back. This is a big deal because he has always had issues with his arms. He doesn't realize he has them in order to use them. So, not only is he realizing he has these amazing appendages, he is also realizing he can use them to play. Getting him to play independently with toys would be a huge deal and that's our next step.

Liam is now standing in his stander for long periods of time and holding his head up. He still drops it once in a while, but geez, it's a start! He's looking really good it in lately and with all the standing he's been wanting to do, it will help him with his weight bearing and extension for getting his noggin up.

Liam is very fascinated with my babbling as of late. He just stares at my mouth while I make open vowel sounds in various tones. He's always been interested in certain mouth movements, but this time it's different. It's like he's studying my mouth and trying to figure out how I'm doing it.

So, these are big changes for Liam. And we don't take any of this progress for granted. We take joy in each new step and appreciate everything for what it is....a blessing.

30 November 2009

November 27th always has such a bittersweet taste in my mouth but this year it was almost entirely sweet.

After being gone for three weeks and returning right before Thanksgiving and then Liam's big day, I didn't really have plans to celebrate the day.

But, I didn't want it to go unnoticed and not celebrate the amazing-ness of having Liam in our lives. If not for him, then the day was for us. A day to show him the joy he has brought to all of us.

I bought a mini cake knowing full well he was not going to get his hands in it and try putting it in his mouth. And I figured there was no way he was going to taste any of it. So, for show, I put the cake in front of him, lit the candles, sang "Happy Birthday" and took pictures for posterity.

He enjoyed watching the candles and swiped at the cake once getting the green icing on his hand.

But then, I decided to see if he would at least taste the icing. A taste can't be too bad, right?

A little gagging and then I could say he tried some of his cake.

But Liam actually did pretty well! He let me feed him icing. So then I boldly decided to try some cake. After balking at the texture with the aforementioned gagging, he would take little bites of icing with cake and was actually swallowing it!

25 November 2009

I don't know where the time went and why I disappeared but I am just going to chock it up to time slipping away while I was holed up in the mountains, just me and Liam. I can't believe I haven't posted in so long!

Our last week at Miracle Mountain went by with lightning speed. I thought the week would drag on seeing as how it was the final one and everyone was getting antsy to get home to their families and get on with the holidays. But it was over before I knew it! Woohoo!

My mom and Aidan came up to see me for my final 3 days so that definitely made things go quick. We had such a great time together. On Sunday we headed to the Blue Ridge Parkway and took a walk to Jumpinoff Rock.

There was no one on the parkway and with cloudy skies and brisk temperatures it made for a perfect day to hike.

Our second hike was to a gorgeous waterfall called the Cascades. It's a long waterfall over slick, smooth rock. Again, we saw no one on the trails and after making our way to the falls, we promptly headed back as the temperatures started to drop.

We rounded out that day with shopping in Boone and dinner out. I was even able to get a few Christmas gifts out of the way.

On Monday night we headed to Bristol, TN to go to the Bristol Motor Speedway to see their Speedway in Lights. The entire place was decked out in lights and after a 45 minute drive we went down onto the race track and drove a lap before pulling into the infield where we ate funnel cakes, kettle corn and rode some rides.

Our final dives took place Tuesday and after saying all of our goodbye's, to friends and staff, we headed down the mountains, across the Piedmont and over to the coast where I felt weird walking into a home I left 3 1/2 weeks ago and tried resuming mom mode to my oldest two!

Today was out first full day back at home and with the holiday weekend we had some running around to do but I am looking forward to getting back into the daily grind.

I am excited about the changes I have seen in Liam already from the oxygen! He is now holding his head up when I hold him in certain positions and holding it steady, he is using his back muscles and lifting himself with them, he is much more engaged and interested in what's going on, and he is wanting to stand a lot! He's definitely not the same guy he was 3 weeks ago and it will be interesting to get his therapists perspectives when we start back up in December. I know they are anxious to get back and so are we.

Liam was scheduled for a g-tube on the 30th next week but we are still going to hold off a bit longer and see how his weight is at this next check in. He is probably going to need it before too long if he doesn't change his eating habits. He's definitely got behavior issues with his food and I still want to walk the line of keeping him eating orally with out making him pissed at every turn because we keep putting food in there when he doesn't ever want it. So far so good, but I'm thinking his attitude will only get worse before it gets better. And when that happens, we will all be ready.

16 November 2009

Liam hasn't gotten any new teeth in months. It's actually been more than 9 months since he got his first sets of teeth (the 4 bottom and 2 top). His pediatrician even asked me at the last appointment if I knew whether he had anymore in there since it had been so long. I laughed and said it wouldn't surprise me but at least he had the most important ones, right?

Leave it to Liam to get 3 new teeth at once, all while here doing HBOT. What's surprising is that one of the new teeth is a molar. And I can feel the other molar right below the gums. So he bypassed getting all the in between teeth and decided to go for the big ones. The first week we were here he would cry off and on once in while and it was very out of character but I attributed it to the new schedule and the HBOT. But I'm pretty sure now it was the 3 teeth coming through at the same time.

13 November 2009

Liam absolutely loves to 'talk' on the phone. He even goes so far as to stare at the phone and grin at it when I am using it. He's been doing a good job keeping in touch with the family while we've been away. He will laugh, smile and grunt as he listens to Daddy, Mimi or his siblings when they talk to him.

Apparently he loves the phone so much that he will even think it's great to 'talk' to the automated recording.

09 November 2009

It's essentially listening to music through headphones (Auditory Integration Training or AIT).

And Liam loved it!

But it is what this music is supposed to do that's so cool!

AIT is presented as a hearing enhancement process. Research suggests that individuals with sensory dysfunctions that make them hyper or hypo sensitive to certain sensory stimulation can benefit from going through AIT.

AIT uses specially designed equipment that randomizes and filters high and low frequencies and intensities. It allows Liam to listen to music with frequencies filtered out letting their hearing adjust, normalize and flatten out the sensitive peaks. Basically, Liam listens to filtered electronically modulated music for ten hours over a period of ten days. The machine electronically selects high and low frequency sounds from the music and Liam then hears those sounds through the headphones. If Liam has any auditory peaks of sensitivity, those frequencies are filtered out either partially or entirely.

Because the high and low frequencies are modified randomly, Liam hears music that is uneven in its tones and it is constantly changing. I'm told the music sounds a bit bizarre, almost as if it's 'drunk'.

For Liam's first 5 days he will hear equal treatments in both ears. But on days 6-10 the sound is reduced in the left ear. This is to enhance the sound going to the left hemisphere. That portion of the brain is responsible for processing speech and language. The goal is to stimulate better left hemisphere development.

There is a big slew of outcomes that could arrive from doing the AIT. I won't bore you with the list, but there are numerous benefits to this treatment.

Miracle Mountain, again going out of their way to make all things possible, provides AIT absolutely FREE of charge. One of Liam's dive buddies had his dad looking into doing it for him. But where he lives, it was $1500 for the 10 day treatment!

The only negative is that we aren't supposed to expose Liam to any high decibel sounds over the next 3-6 months due to sensitivity to noise following treatments.

I guess Liam will have to wear ear plugs for church. Because it's ear blasting in there for him for sure.

Liam has long days lately and today resulted in no nap until 4 o'clock. He fell asleep with only 5 minutes left on his AIT.

And the white stuff all over his face? It's the cornstarch they coat his neck ring with. The neck ring is the bottom portion of his oxygen hood. The cornstarch keeps the rubber ring from sticking to his neck. And it never fails to get all over his face by the time he's done.

08 November 2009

We had today off from getting oxygen so I decided to seize the day and go exploring. Liam and I got started on our early day and headed to Blowing Rock first.

Here's the famous rock:

There's a neat Indian legend behind the rock, but I was more enamored with the beautiful views from up there.

Just beautiful.And there is even a bit of fall color still left on the trees.

After spending time exploring the gorgeous scenery I headed into Boone and did a little shopping. We were having a fabulous time until while carrying Liam in his carrier he started coughing, gagged and then threw up. Then he threw up some more. And then some more.

I knew we would not be able to get out of the store quick enough when he started to gag so I ducked his head down onto my chest and let him throw up between me and his sling.

When it started to run down his legs and onto the floor we high tailed it out of there quick.

06 November 2009

We have now almost finished up our first week of HBOT dives. We have done two a day so we have officially completed 10 and after doing two more tomorrow we will have Sunday off. There is no work on The Lord's Day. Which is awesome, because it's nice to get a break!

Liam is doing very well. Other than crying off and on when we ascend, he's a super champ. He has managed to ascend twice with no tears so he's getting used to it now and was so relaxed for the last two afternoon sessions that he fell asleep, once before we had even finished ascending and I had to force him to stay awake (you are not allowed to sleep while ascending because of barotrauma).

This is what the chamber looks like:

See that little window on the left front side? That's our window to the outside world. The big round circle on the front is obviously the door. The door is sealed here because the chamber was in use when I took the picture.

This is the control area with one of our certified techs, Sharon, who is amazing and very good at what she does!

You can see the monitor behind her where she can always see what is going on with us and can hear and communicate with us from there. We always have two techs on hand in case of emergencies. It is a freaky thought to be in the chamber and think that you are locked in and the only way out is from the techs!

While we are in there they vent the chamber two to three times exchanging our exhaled air for fresh compressed air. Which makes our ears pop again.

This is what Liam looks like while he has his oxygen hood on:

Liam and I got to meet the founder of Miracle Mountain today!

Robert Hartsoe started Miracle Mountain after seeing amazing results after using HBOT with Garrett, their grandson. MM is a not for profit center and they do this work for the love of God and kids. I was originally against coming out here to MM. The hospital is 30 minutes away, there is not a Dr. on staff, it's in the middle of nowhere and even though cheaper than anywhere else, it was still an expense we couldn't afford outright.

But, God slowly opened all the doors for us;The risk is very, very low that anything bad would happen during the dives. The biggest concern would be seizures, but Liam has never had those. And after learning there are certified techs with 1000 hours before they become certified at MM, we felt comfortable with the fact that there isn't a DR. on staff. It also helped that MM has done over 22,000 dives with never one problem!

We raised all the money to go.

And after reading about Robert's knowledge about the chamber and the results, he put our mind at ease about going.

So, when I talked to Robert today, I told him about my fears at first and how those fears had all been put to rest. He was happy to talk to me and wanted me to make sure I pass on how wonderful Miracle Mountain is.

So, I am.

It's been wonderful.

See? Liam even agrees.

Robert said that one of the first changes to occur is with their vision! He said he's seen kids with CVI, like Liam, make huge strides in their vision skills following HBOT. He also said that healing can peak at 2-3 months following HBOT.

I'm posting the picture I took of an article posted on the wall of the waiting room. If anyone is at all interested in hearing more about HBOT, or how it works, I suggest reading this article. I also have a study that was done on mice showing how effective HBOT is if any one wants to read it.

What's so great, is that people everywhere are hearing about HBOT, trying it against medical professionals opinions and seeing amazing results. And then some of these families are opening up chambers all over the US in order to help these kids.

03 November 2009

Due to the incredible outpouring of love and money from our friends and due to the very generous gift of a dear couple who paid off the balance of the bill, we were able to attend Miracle Mountain for their November session!

Not only that, due to another couple and their very generous gift, Liam will be able to attend another session of HBOT sometime in the spring!!

To say I am overwhelmed with the love and generosity that has been shown us and Liam is an understatement. I would never have imagined being able to finance one trip let alone two! Thanks is not sufficient enough for the gratitude we all feel over this opportunity! We are so excited and sincerely thankful for all of you for making this happen for us.

So-

We (me and Liam) are currently at Miracle Mountain for the next 3 weeks!

We are nestled in the Blue Ridge Mountains in North Carolina, about 6 hours from home, and are literally out in the middle of nowhere. When I say it's in the mountains, I mean deep in the mountains. We are a good 1/2 hour drive from the nearest town which isn't that many miles away. But in order to get there you have to drive roads that cut through mountain passes and switchbacks and you can't go more than a few miles an hour on these routes.

It is beautiful out here though. The leaves are still falling off the trees and the views are amazing.

This peak is right outside the trailer I am staying in. As the sun was setting, shadows were covering the ground and it was getting dark, but when you looked up, the last rays of the sun hit the peak and the golden red hues of the leaves were lit up as if they were on fire. It was gorgeous.

God's beautiful canvas in all it's glory.

Unfortunately my pictures don't do it justice at all!

Anyway...

Liam and I have now completed 6 dives. We do two dives a day spaced a minimum of 3 hours apart. We are put into a large, very thick walled chamber that has one small window to the outside world. There are fours chairs in the chamber allowing 4 people to sit comfortably while diving. The support person can sit on the floor of the chamber or if the child is small enough can have them sit in their lap. They also will allow for an additional client and support person at times making the capacity of the chamber ten people. But thankfully, our dive time is not full so we only have 3 clients and three support persons. Both of the clients Liam is diving with are boys with autism.

Actually, all of the clients in the November session are boys!

Liam is doing really well. We ascend in the chamber to 1.5 ATA and when we reach maximum pressure the clients get oxygen hoods put on their heads and they breath 100% oxygen for 1 hour. We then descend back to normal pressure.

The hardest part for Liam is when we ascend. Liam cries during this process because the pressure is quite great and you have to continually pop your ears. Liam doesn't understand what's going on so he fusses and cries. I do give him sips of water so he can swallow and clear his own ears and he is on Nasonex to prevent trauma. But he still cries. Sometimes they will also back up a few feet in pressure to clear his ears for him.

Once we are at full pressure he is a champ. He just hangs out with me in the chamber and enjoys sitting in my lap. There is a small screen so the kids can watch a movie but Liam is on the opposite side of the tank so he can't see the screen from there.

Liam doesn't mind descending at all. We can descend pretty quickly, but it probably takes twice as long to ascend. And sometimes they go slow so Liam doesn't hurt.

Due to the pressure, our ears are checked out each time before a dive and if there are any signs of problems you are unable to complete the dives until your ears clear. Luckily, Liam's ears have been doing really well. Mine are too, but I was really bothered by it on my first day. My head hurt and my ears ached into the night after our first two dives. Now, I am used to it. I am hoping Liam gets the hang of it and can help himself, but until then, we do what we can to make him comfy.

I have been looking at studies online about HBOT and they are all so encouraging. I look forward to updating you all with great news of Liam's new accomplishments. It can take time though and although I can be impatient, I do know that we may not see results right away. The techs here said that one session can take months to see results. One man who is here with his autistic teen age son was here in the spring and he said the changes in his son over the summer months following their spring dive were incredible. He said his son's teachers were amazed.

01 November 2009

But she smiles a lot too. Usually.Unless I throw up. I don't think she likes that very much.She usually doesn't smile after I do that.I'm pretty sure she knows I don't mean to do it though!

Anyway...I got into the spirit of Halloween early and wore my skeleton jammies all day!

See? They even glow in the dark!

This is the rest of my family.I don't know why they went with freaky masks this year.It's kind of weird.And funny.I couldn't quit laughing in this picture!I chose to go as a unicorn!Very non-scary, cute and cuddly.I know the grass monster costume was the people's choice....but, since my grass monster costume felt like wearing carpet, my mom thought it would be best to wear the unicorn since it was 80 degrees outside!

Here's my dad pushing me in my stroller.

Here I am laughing and smiling again.This smile is because my momma asked me what a horsey says.And I crack up when she makes that funny noise!

Here I am looking hot!No, really!See, my costume is unzipped?It was in the 80's...that's way too hot for me!I hate the heat!

Here I am just laughing again at my momma. I have no idea what she was doing. Oh yeah! She was trying to take my picture and I kept looking the other way when she took it. So, she started jumping up and down and saying my name, which always gets me giggling.And then she finally got the shot she wanted.I thought it turned out pretty cute, if I do say so myself!And I had a really good time for my first Halloween wearing a costume.

But momma says I shouldn't get used to all the attention. Something about it going to my head and it's a good thing we don't dress as cuddly animals all the time?

I'm not sure what she means.

Oh well. I'm off to bed. I just wanted to update everyone on my Halloween!I better get my rest because I have my first dive tomorrow!

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This blog has journaled the fallout of giving birth to a micropreemie & how it's affected everything in our life from marriage & family, to friends & church & beyond. Liam's early arrival gave him a list of diagnoses like CP, CVI, & ROP. His most impacting special needs are his mixed tone ataxic/athetoid-like cerebral palsy & vision issues. He's non-verbal but teaches us all. Follow along as we try to live this crazy normal, knowing God is the author and he isn't finished writing this story.